I got an email from a fellow celiac recently. Here’s an excerpt of it.
But I feel unwell, in a way I never did before diagnosis.
I feel like Celiac has stolen a part of me away. The sheer amount of will and brain power managing this disease takes has me exhausted. Analyzing how I feel all the time wondering if the headache, or canker sore, or bad or sad mood is because of gluten. And I don’t think I can do much better; I really can’t be perfect as much as I might try. None of us can. So is this just me now?
I’m lost in the Celiac black hole and can’t find a way out.
To this person and to all others struggling with this disease, some friendly words of advice from someone whose been there:
Are you frustrated that your body has not completely healed yet?
You WILL heal.
Are you struggling with the fact that you can never eat gluten again?
You WILL come to terms with it.
Do you dread going out to eat because of fear?
You WILL enjoy nights out again.
Do you feel like your life is consumed by this disease?
You WILL learn to live with it.
Do you feel awkward at social situations that are built around food?
You WILL realize that food is not what’s important.
Are you jealous that others can eat whatever they want?
You WILL stop the defeatist attitude.
Do you just hate being a celiac?
You WILL learn to accept it.
Look…I get it. Our disease can consume us.
Don’t let it.
Do your best. Mistakes may happen. Don’t beat yourself up over them. Learn and move on.
We’ve got one life to live. Live it.
And if you are struggling, just realize that many of us have been where you are now. Rest assured…YOU WILL GET THERE.
Celiac is not a death sentence.
It’s a life sentence.
To our struggling celiac…we get it. And we understand what you are going through. And to that I am sorry you have to go through this but I do believe you will get better, especially since you have found a great group of people that make this celiac community. I am newly diagnosed since March. I think we have all been through every emotion GlutenDude has described…frustration, dread, jealousy, and HATE. It sucks, however we can not change having this lovely disease. I thought I would never feel good again. Even after my diagnosis and being gluten free I struggled and continue to struggle here and there. I am now on my longest streak of not being cross-contaminated or getting hidden gluten for a whole 6 weeks! I know that is not a long time but I feel its a small step to getting better. As you said, the migraines are easing up, the brain fog is lifting and I feel better every day. So please keep your head up and keep the end goal in sight and that is to get better. And in the mean time, vent as much as you can to those who are willing to listen.
Dude
GREAT post! I empathize with your emailer – next weekend I’m 23 months post finding out I needed to be & have now been free of most gluten. It’s a day (Nov 19, 2012) I’ll always remember for the rest of my life like when JFK was shot, when a man first stepped on the moon, 9/11 and other personal moments like my wife’s birthday & our wedding day. I was so sick when I found out that I will never be tempted to ever knowingly eat gluten again as long as I live. I miss some foods and drinks but not enough to linger very long thinking about them. Almost being mostly healthy again is sooooo much better than any food or drink. It helped me so much listening to others here during the last year to know I wasn’t alone.
Tonight, I feel the depths of your emailer’s plight. At 1.5 yrs post gluten I was relieved to learn I no longer had cancer from gluten but I was blind in my right eye and couldn’t half see out of my left eye from long term undiagnosed gluten caused damages. My body was so weak that everyday activities were almost too much many days. Gluten Dude and this blog’s family gave me more information and emotional support than I ever dreamed I needed and I will always be grateful because you helped support me through some of the darkest (literally) days of my life.
I saw Dude’s tweet to a young lady earlier today concerning lymphoma because her brother was ignoring the Celiac’s prescription for life and she was very sad. I almost tweeted because my Mom is now almost completely healed from Stage 4 NHLymphoma (89% cancer in her bone marrow, lungs, lymph nodes, abdomen, etc), solely by abstaining from ALL gluten, but since I’m almost free from the Celiac Black Hole, I didn’t have the energy to tweet today. Another reason I so admire GDude and his mission of mercy and information with his unrelenting dedication to advocacy and those in need – the Dude keeps on like the Energizer Bunny.
However, because I am so familiar with the emailer’s condition and location, I wanted to encourage your emailer that as bad as my 1.5 yrs post gluten was – my 23 months post gluten is showing some light at the end of the long black tunnel and I’m feeling like my former self more days than not these days – so keep diligently trudging ahead because, as GDude stated above, your life WILL most likely get better. Fellow Celiac brother/sister emailer lost in the Black Hole – also keep trudging because you’re really not lost – you just can’t see exactly where you’re going yet, as many of us at your stage were, but it does get better – GDude and I and many others here are living proof!
This year my Mom and I have each survived gluten caused cancer, I have much of my vision back, the INSIDE of our home was struck by lightning on Sept 2 but thankfully did not burn down and my law office was flooded by broken water lines 3 days later. I’d just left the room the Lightning struck or we could have skipped the funeral and gone straight to scattering my ashes; however, I’m still alive and, good Lord willing, I’m playing golf again Thursday afternoon for the 1st time in much too long. Even though I’m not even close strength wise to where I was 5 yrs ago, I can at least anticipate I can get back there with some more diligent effort and I now at least have enough energy most days to keep trying. I’ve progressed from No T to at least Some T and maybe soon I’ll make it all the way up to Low T – O Happy Day!
Dude, so long for awhile, you’ve set this little bird free back into the wild. I said to my wife tonight before I saw your Post that I was finally feeling good enough again to move on with my normal life and how grateful I was for you, your website and your blog. Then I saw your blog post while I was walking the dog and I wanted to tell the emailer to hang in there because we can make it out of that Black Hole together. Your emailer struck a strong chord with me tonight because the darkness and depth of that Celiac Black Hole are still so vivid to me.
Hap
——-
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
–Maya Angelou
I’ll never forget how overwhelming my original depths of CD and Cancer made me feel; however, even more so, I’ll never forget how Gluten Dude and his friends encouraged me to soar to greater heights again.
I apologize for the length of this comment but it contains the remainder of my comments for the rest of 2014.
Dear emailer, you have my best thoughts and prayers with you tonight and in the much brighter future!
I so can identify with this post – and especially with Hap’s reply. I thank him for taking the time and energy to post it. I could also have written as he did: “My body was so weak that everyday activities were almost too much many days.” In fact, for many months everyday activities Were too much and I truly thought I might have to be put in assisted living. And then one day, it was just better. I was finding that I could stand up for longer, showers weren’t an ordeal, my brain was working better, the nausea wasn’t there so frequently and so much more…in fact I was starting to see the beauty of the world again.
I too am so thankful for Gluten Dude’s blog. His attitude inspires me as does the attitude, experiences, and thoughtful comments that are posted. And it has been helpful to know that recovery is not a quick thing, but one that requires time and patience.
So I would tell that person who is discouraged to just hang in there. Keep doing the things one needs to do to manage this disease. There may even be more things to look at – like is there an intolerance to fructose or to some foods that are causing gluten-like reactions. But truly, it does get better. Although for sure I had a time where I thought it would never get better and I am thankful to my husband and God for seeing me through that dark period. I truly know now that it gets better since we’re eliminated gluten poison from our bodies and thus our body can start to repair/heal. There is an escape from the “celiac black hole”. Honest.
Dang Hap…don’t know what to say. This onion sandwich I’m having is making me tear up. I’m glad we’ve connected. I’m glad you’re healing. My best always to you. You will always have a home here when you need it.
Hap! As much as I enjoy your thoughtful comments I celebrate the fact that you’re gonna get out there and wring the juice out of life. Mind you, that doesn’t mean you can’t stop by from time to time for a visit. Go, Hap!
Have a wonderful golf day!
Thank you for that Hap. It is a black hole and we can climb out. There will be setbacks and we can’t beat ourselves up or lose hope. I am an 18 year celiac and I still have my moments. Hopefully your string of bad luck is about to end.
So happy I found you guys!!! I quit gluten 3 months ago have been entirely “clean” for 2 of those months. It wasn’t hard for me to give up the food, I never think about never eating anything with gluten but the emotional aspect has hit me so hard. I empathize with the comment above especially “is this me now”. You see I am waiting to get back to me. I feel like I lost myself 25 years ago to this. That along with the fact that my 3 children never knew me when I wasn’t sick, 15 hospitalization with spinal meningitis, auditory hallucinations, neuropathy (aka no sleep) for 10 years and not being able to gain a pound over 103 I think I’ve had enough gluten. No gastro (thus no diagnosis) until 3 months ago and by then 35-40% of my long beautiful hair gone (the only thing I still liked about myself after 25 years of body and face ravaging illness) Soooo, do I feel sorry for myself, no just pissed beyond belief BUT, I am optimistic that the rest of my life will be lived to the max. What I have figured out is that I have felt guilty for being sick for a very, very, very long time. Great kids but spoiled beyond belief and my husband who I suppose got sick of having a sick wife has built an entire life for himself that has little or no room for me. So I am a huge BITCH right now, emotional as hell and I’m not apologizing to anyone for it. The rest of my life is mine, I think it might be a pretty fun and exciting ride; those that want to jump the train are more than happy to come, if not get out of the way. Moral to the story don’t get sad get mad and take back your life. This illness is a horrible enemy and you can wave the white flag or you can kick it’s ass. In my case I was told I was a medical mystery, one of only 10 people in the US to have this mysterious, unknown, incurable illness of no name. IT WAS GLUTEN….& I think it kicked my ass long enough!!- If I have offended anyone with my language I will apologize to you, I’m not handing them out to just anyone so smile and live gluten free
You make a good point Kathy. It took me awhile to realize that I was not upset about having celiac or being on a gluten free diet, but I was angry and depressed once I realized how long I had been sick for no good reason and how it affected my life. I was diagnosed 18 years ago and no one seemed to know about celiac, I had no internet or connection with any others. Looking back is hard, you just have to keep looking forward. Best of luck for your new life.
I just celebrated 3 years gluten free. Does it still suck? Yep. But it sucks a LOT less than it did when I was first diagnosed with Celiac! I agree, it’s a life sentence, not a death sentence. It DOES get easier and after a while, it’s ‘normal’.
To the emailer, hang in there. Everything you’re experiencing is completely understandable. My initial response to “this” was to see just how fast I could go. I found out I could go pretty fast but I stopped just as hard. Many of us assumed that “simply” changing our diet would be it. Not so.Your body has been depleted over a long period of time. It will take a long time to heal.
There are over arching side effects that many celiacs experience but remember, we’re all different. Continue on the path, tweaking here and there as you go. There may be foods that just aren’t helping you regardless of the fact that they’re “celiac friendly”. Hopefully you’ll get to a place where the cankers etc are a distant memory.
I think we all struggle with these days – no matter how far out from our diagnosis date we are! I know that I do at least, and I’m only 6 months post-diagnosis. There are days where I’m so exhausted from this disease I can’t get out of bed: both physically and mentally. But it doesn’t have to be all-consuming and I regularly try to give myself a big dose of perspective and realize that I have been given this diagnosis and now I can LIVE and be healthy, not dying a slow, slow death from gluten. My best to you and to everyone who struggles with this disease.
This month I am exactly 6 years gluten free after my Celiac diagnosis in Oct. 2008! I was so sick from so many years of misdiagnosis (20 years to be exact) that the first three years of being gluten free were some of the worst years of my life. Even though much was improving, the lifetime of damage eating gluten did to my health and life was devastating. Not just physically, but also financially. 20 years of hospital bills, being unable to work, etc. left me in ruins. But I am slowly crawling my way out of it and each year life is getting better. I no longer spend every day thinking about this disease. Sometimes I actually forget that I have Celiac disease entirely because I’m so busy now actually LIVING my life.
Gluten Dude is 100% correct. You will heal, it just takes more time for some than others. It may have to do with age, the amount of damage that took place, genetics, etc. But, there is hope to feel well and happy again. Never lose hope. Just having an accurate diagnosis has set you in the right direction.
Hi!
It does get better, it is a rocky road. Try to remember a few things which I found helpful.
1) Don’t get too too wrapped up in yourself – you need to but do not lose sight of the rest of the world – stay mentally connected.
2) Figure out a standard “clean food day” and practice it – this will become automatic after a while and helps when you have a rotten day – helps physically because assists the healing, helps mentally because you feel that you are doing what you can about it.
3) Let go of the self pity and focus on the better stuff – can’t do what you could do 5 years ago, fine. Doing better than last year – hold on to that!
We have all been in the “black hole” at varying times, and for different lengths of time – think of the old story about the donkey who fell down the well. He was crying out pitifully at the bottom, but could not be reached in the standard ways. The farmer wrote him off, and started shoveling dirt into the well to bury him alive. The donkey used the dirt to raise himself up, and once there was enough dirt shoveled into the well, he just walked out of there.
Moral of the story – you have a choice, you can let it kill you or you can use it to raise yourself up. It’s all in the attitude 🙂
Change your attitude change your life…….
You can’t control this but you can control your reaction to it 🙂
Best of luck and you WILL get there 🙂
Joanna
I just found your blog and you are awesome! I have been GF for 5 years and I still go through phases of being disgruntled!
My 7 year old was recently diagnosed and now I am mourning the LOSS of TIME! I am a normal adult with a busy life but I am also starting my own business.
It feels like my life revolves around menu planning and shopping at more than one grocery store! I have a picky kid and I am buying bread that is $4 a loaf. Some days he eats it and other days I have to throw it out. Some days the REALLY expensive GF crackers are delicious and other days he won’t touch them.
Then I see the stupid bento boxes with lunch made into cute animals it makes me want to punch someone! I don’t have time for that crap! Just because we are gluten free, I didn’t magically start loving meal prep! I have always hated cooking and now I am supposed to also squeeze label reading into my schedule…on a regular basis…for life. (Since manufacturers won’t stay consistent!) I have to go now and research what Halloween candy won’t give my kid the Big D.
Sorry for the rant…I will step away from the mental Dark Side once again in a few weeks. I will prepare my bag of safe candy for my kid so he can stuff his face while trick-or-treating so I can go home and check for gluten and razor blades without urgency.
Yes. It gets better. Thanks for someone having finally found why your life was riddled with sickness, in my case for over 40 years, does finally come. Acceptance and being grateful that at least you WILL live does come. Every person on this Earth is given a load to carry. We are never given more than we can handle. I have even been able to let go of most of the anger that was aimed at stupid doctors for calling me a hypochondriac all those years when, in reality, their ignorance and arrogance were killing me. To your reader, listen to Dude. It does get better.
Amen Deb. I think we should all adopt the Frozen song “Let it go” for our celiac song.
So glad you posted. I can relate to those feelings very much! Even if there is no answer, just nice to know im not alone.
It does get better. It took me over a year before it became “easy” or at least easier. I also realized while on the road to healing that due to my issues with gluten I also was deficient in several vitamins that allowed some of my symptoms to continue. I cannot tell you exactly what you may or may not need, but I needed a good sublingual B vitamin, magnesium (helps with headaches), and in the beginning I needed some iron (be careful with this one…get your iron level checked by your doctor). A decent probiotic is also helpful for some, but be careful of the real high potency ones. I was taking them daily and then I redeveloped headaches. I read that you can get a buildup of lactic (?) acid from probiotics and that can trigger headaches. I now only take them once or twice a week and the headaches are gone. I would have a discussion with your physician, or even better, a naturopath if you can. It does get easier. Just keep moving along taking one day at a time and one day you will look back and realize that you no longer have to put in all the effort you once did. You just enjoy life again!
Thanks for this post! Our 7 year old daughter was diagnosed with CD a year ago. I thought she was GF but she’s just been diagnosed with DH. I’m in the process of cleaning my kitchen and ridding it of all gluten and potential gluten harboring items. I’m very overwhelmed but I know it’s for her health that I create a safe place for her.
It is a life sentence…without parole. Sorry. Couldn’t resist throwing that in there. 🙂 I’ve been trying to go gluten-free since September 2012, and gluten exposures have gotten pretty rare now. It takes time, but you do get there. You may have other issues that will arise and complicate things as well, like additional food reactions. I just discovered that vinegar was causing me problems last month. It’s one that makes me feel similar to the way I do when I’ve had gluten. Guar gum and flaxseed affect me in other ways. Also, when you know how it feels to feel really great, you notice a lot more when you don’t. I’ve spent the last few days feeling really fatigued and not knowing why. I’m feeling better today and am hoping it continues. However, always in the back of my mind is the fear that I may have to eliminate even more foods. Hoping we all get to the point where our bodies are working the way they should, where we all feel great, and where we’re all not eating the foods that harm our bodies.
I just wanted to mention that I felt a little better after adopting a gluten free diet, but shortly thereafter my health quickly started to decline. My doctor refused to listen to me about how I felt. I changed doctors. The new doctor ran a ton of tests. It was not imagined… my vitamin and hormone levels were all screwed up. Once we figured out my deficiencies and addressed them I finally started feeling better. It was a long road, but finally I feel better. It does get better. I know almost instantly if I ate something wrong or forgot to take one of my various supplements. But when I do things correctly every day I feel pretty good now. Its a lifelong journey though.
I’m so glad you changed doctors. Even after celiacs go gluten free, there are other issues that need to be addressed. The physical healing takes time, much longer that I wish it would. It’s also important to deal with the emotional aspect of the fact that the lifestyle change is forever. I was diagnosed a little over a year ago. Most of the time I accept it as matter of fact, on other days, I weep. On days when it’s a struggle, I make sure to tell someone, read the Dude’s blog, and/or make myself something delicious to eat (thank you Jennifer Esposito – I learned that from you!)
G Dude and so many others said it so well. But even though I’m probably repeating, I’ll share my thoughts too. You are DEFINITELY not alone. When I was diagnosed I went through a period of serious denial. I ate an entire box of cookies one night. Long story short, I woke up shaking uncontrollably, in a cold sweat, and could not function for the life of me. After that, I realized this was serious. To be HONEST, I still have some moments where I get so down I eat something I shouldn’t. That’s a MAJOR MISTAKE. I always feel so sick for at least 3 days after that. I have many other allergies/intolerances as well, as I’ve learned many other celiacs do too – so that doesn’t help. I’m 3 years into this. It’s hard. But TRUST everyone in this group. It does get better. There’s a light at the end of the tunnel that is so wonderful. When you are “clean” you feel so good. A feeling I know, and I’m sure all of us can relate to, never knew existed. I suffered for so many years, not knowing what was wrong with me, considered- and tried – suiccide- a few times. Now that I’m clean, I feel human. I feel, I love, I’m happy. I didn’t know those feeling existed. You will get better. Life is amazing when you are healthy. Keep your chin up and stay positive.
Thank you for posting this. I’m just past 3yrs post-dx, and I’d started to come to terms with it until last March, when I was told I needed to be re-tested. That month of freedom was exquisite, but I felt terrible, and it set me back to the beginning when I, of course, tested positive. I still struggle with the overwhelming sense of a loss of freedom, but I’m lucky enough to have a magnificent support system. It’s the freedom of spontaneity that I miss more than the actual gluten, but I’m beginning to accept it (still grudgingly) again.
Normally, I feel like Gluten Dude. Happy and optimistic. And then I get glutened AGAIN, by something that’s supposed to be gluten free, and I’m sick and miserable and just f’ing DONE with this celiac bullshit. I’ve been gluten free for 15 years and my husband has been gf for 9 years (my health got SO much better when he was dx’d, because I was getting x-contam at home, despite attempting to be safe).
I’m tired of never being able to eat elsewhere without getting sick. I don’t know how you all do it. I have never eaten at a restaurant without getting sick. Never. Even though I call in advance, talk to the server, etc. So I’m done with that. And I’m tired.
I’m tired of explaining over and over why I’m not eating. That no, I don’t have an eating disorder. Being the center of attention at every event where there’s food, because I’m the odd man out. So tired of it.
And I’m tired of having to provide all the food wherever my kids go. Having to tell them that no they can’t go out for Halloween, because the little candy bars are made with “run-off” chocolate, i.e. chocolate that is poured over regular bars that may or may not be gluten free, onto the little bars.
And I’m goddamn good and tired of hearing how much easier it is to be celiac than to have a “true allergy”. STFU.
I’m tired of people assuming that gluten-free food sucks. If I hear one more time, “Oh! This is actually good. I didn’t expect it to be so good, gluten free”… I don’t even know.
I’m tired of paying $17 for test strips to test food for gluten.
I’m tired of trying to explain to my Mom that she needs to be gf. She has Lymphoma. She has 2 brothers with Celiac. She has every symptom. She will not even attempt it. Even though she gets better when she visits me, and gets sick when she goes back home.
I hate this goddamn disease. 15 years and it still sucks. Sorry, newbie. It continues to suck forever.
Oh, and I’m glutened right now. Can you tell? Ask me in 3 days or so, and I’ll talk to you like all the people above. 🙂
I’m new to this
I have celiac disease and I lost about eighty pounds.ive lost my gag reflex,they told me that I have a vestibular issue.im soooooo lost I don’t even know where to turn.i am severly depressed.i have bad vision,hearing,memory,feel detatched from my wife,kids,friends,God …….. You name it I’m detatched from it.They sent me to the mayo clinic,Swedish clinic in Seattle .UK university in Kentucky,vanderbelt hospital in Tennessee.i live in northern Idaho.my ears roar,my vision is screwed.my whole body feels like I’m being electricuted.my anxiety and depression is so severe that I can’t even think straight.im suicidal.i have fought this demon called celiac that I can’t handle it much longer.i can’t hear my kids well or see them or my wife.the littlest stuff like loading a dish washer is a act of congress.my feet curl in my hands feel numb and blotchey.i can’t even play checkers with my baby boy and girl.i am a father of five who I love to hunt and fish with,I raised them that way to give them a passion in life.we just found out that mom(my wife)is a type 1 diabetic.my stuff started with headaches,blurry vision with floaters.which is getting worse.my ears roar so bad I can’t sleep .my body won’t quit! I try to get help from doctors and they look at you like your chewing on crayons in a corner!i was a service writer and the number 1 dodge dealership in the world!!!! For five years.my job was to take care of my mechanics and make sure there hours were on.very fast paced job and I loved it!!! Now my wife has to ask me if I ate or drank and for the life of me I can’t remember!!!! They checked me for everything you name it I was checked for it!They said all they could find was celiac,like it wasn’t a big deal……… They are ignorant!! I often wonder why these people drive a Lexus and look at me and just say it’s all in my mind! Just go gluten free(and that was the almighty MAYO clinic) they didn’t do shit for me but bill my insurance company and that was it!!! I guess I’m sick of feeling like I’ve pissed my pants and forgot my name concept all the time.i had a good life and job and a loving family and now for the life of me I can’t remember how it felt and it hurts so bad I could puke.i just want to come back home in all aspects…… Not looking for a reply just wanted to talk. Want to feel like a human and not a patient again I’m lost……………..
Forgot to add that I hope you had doctors take a really good long look into thyroid problems, doing ALL the tests needed, not just TSH and T4. They have to do free T4 and free T3 AND thyroid antibodies, because you could also have autoimmune thyroid disease, and that on top of Celiac is a real bear. But most doctors look at just a couple blood tests and say your thyroid is fine. As you well know, they are wrong a lot of the time.
Hi Bubba,
I’m sorry to hear about all your symptoms. How long have you been diagnosed/gluten free?
I can sympathize as I thought for sure I was headed for “assisted living” when celiac disease struck me down with severe back spasms. I couldn’t see any light at the end of the tunnel. And I had all sorts of nasty symptoms, some of them which you have. Like being very suicidal. And vision problems. And awful anxiety and panic attacks. And not being able to do a thing for myself. Taking a shower every 2-3 days was the best I could do – and that while sitting on a shower stool. My husband had to take over the cooking and washing for a period of time. I also went through an unpleasant “detox” from gluten for several weeks. And I lost 50 lbs. and am still trying hard not to lose any more.
But it did get better. But not until about the 5th month of being strictly gluten free and eating very simply (steamed squash, ground turkey burgers, other roasted veggies – nothing fancy – whole foods). I also identified other food intolerances like corn and fructose. It really took some work so get better. And I’m not at all where I want to be – but I’m not on the couch 24/7 like I was when I was first diagnosed.
But back to you, “talking” to others is very beneficial I think. Some of us do seem to have been hit really hard and it can take longer for us to get back some semblance of normal.
I was diagnosed almost two years ago. Throughout all of this they also found some lesions on my frontal horns and two benign cysts called cholesterol granulomas of the petrous apex. The doctors say these have nothing to do with my symptoms.ive jumped through every medical hoop they wanted me to.i found out something about the medical field………. When they don’t know what you have then it’s just depression. If it were depression only then I would go see someone to help me with that(which I have,anti depressants don’t work for me you if you can name one I’ve taken it) pain meds don’t help.i know that none of us are getting out of this life alive but I would like to be around a couple more ice cream seasons and watch my boys grow into proud men and my daughter to in to a beautiful grown woman(which she will,my sissy is beautiful right now I could only imagine how she will look full grown…I suspect as beautiful as her mother).I kept having trouble breathing at night when I would sleep and it felt like someone shot me in the stomach and the bullet lodged in my spine.I would wake up not being able to breathe as my wife was calling 911.they said it’s only anxiety and panic attacks.Bullcrap!!!! I told them I might be anxious but I know my body!!! I was in a wreck with my twin brother in 2004 and he was killed laying in my lap and I couldn’t help him,all I could do was tell him that I loved him and to hold on(knowing he was dying).my femur was crushed.couldnt walk for about a year. I didn’t even tell the doctors anything about it cause that would have been the problem…when in all actuality its celiac. I know what depression is as well as anxiety and it was the loss of my twin brother and knowing that I would never see my bro again. Was I hurt….yes.Was i depressed…..yes.Do I long to see him….yes.but I don’t expect him to knock on my door anytime soon. But this is different,celiac can literally kill you.At any rate….. Come to find out I was having gallbladder attacks.i went to all these renouned clinics and hospitals around the country and none of them could help me… It took a old nurse in the small town I live in to say it’s your gallbladder and she was right. I think I have neuropathy and arthritis in my legs and arms.had three spinal taps which indicated high protein(auto immune) and my eyes and mouth are so dry which they said they think I may have sjogrens.i guess this won’t change anything but the things that can come with celiac is amazing!! It’s not taken seriously from the medical field and it’s not right. I wished some of these majestic,arrogant,self absorbed 6 digit a year doctors could stay a week in my house and see what this disease is doing to my already I’ll wife and our beautiful children. Thank you for replying to me Cindi. you are appreciated . Bubba
I have CD diagnosed in last year plus some other issues. I don’t know if you’ve tried but I’m having decent luck with functional medicine practitioners. I’ve heard really good things about Robin Thompson in Bozeman and see Cynthia Culp in Boise. Might be worth calling them to see if they know someone in the panhandle that could help you if you don’t want to travel. I think Robin might be willing to do more over the phone. They at least take time to really listen and are more willing to explore different ideas.
I feel as if the medical community has dropped the ball on Celiac Disease, because there are quite a few of us who really don’t “get there” as easily as others. I have been gluten free for 14 years, still learning new ways that I can be exposed to gluten and feel as if I might as well give up trying, sometimes. I have to say, I am a lot better than I was when I got diagnosed, but just about anything is better than lying in bed, having total body muscle spasms, not knowing your own address or phone number, not remembering how to add or subtract, and having to have someone care for you because you can’t hardly do anything for yourself anymore. But I still struggle, and I honestly feel your pain. Just remember that while it won’t necessarily be as if you don’t have a life altering disease some day, the symptoms you do have now WILL get better. Stick with this website, go through the blog posts when you can, and you will learn a whole lot about how you might be getting glutened and not know it, as well feel as if you are among people who finally, FINALLY understand what you are going through. We do. And I know you said you weren’t looking for a reply, but I just had to say something to you because I know how lonely this disease can be. You might have to cut a whole lot of foods out for awhile in order to allow your gut to heal, but you will heal if you do and, eventually, you will probably be able to add a lot of those foods back in. Ok. Please hang in there. People here care.
Thank you Deb and I will be on here a lot. I’m glad I found this website.
Bubba,
You are so right about the medical field saying “depression”. Before I was diagnosed with celiac, I was diagnosed with autoimmune thyroid and adrenal dysfunction for 10 years. I spent a lot of time on thyroid forums and it is shocking (and criminal imo) the percentage of cases where docs had just pushed anti-depressants on folks initially. Thyroid disease, like celiac disease, is very under diagnosed and undertreated. And of course I might not have developed the thyroid and adrenal problems so severely had my celiac been properly recognized. I had several visits to the gastro doc before the thyroid/adrenal problems developed but of course they just gave me the ambiguous IBS diagnosis at that time. Nope, in retrospect it was classic celiac intestinal symptoms I was reporting.
I agree with you that celiac can kill you. I know it has affected me from head (hair loss) to toe (neuropathy) – and assorted parts in between. It is truly a disease that can affect the whole body, not just the gut. And I agree with Deb that docs have “dropped the ball” on this one. I was so blown up with fluid the year before diagnosis that I could hardly walk and had trouble breathing and totally ached, and my GP didn’t even seem to notice. But I did get a diagnosis of “obesity”. HA – now I suppose they think I’m anorexic or bulimic since I’ve lost so much weight. It is amazing to me how much docs DON’T know about this disease and the havoc it can wreck on one’s body over time. But I’ve found that even on forums and such, some celiacs who haven’t had it as rough don’t seem to realize how debilitating it can be for some of us.
Do you feel like you are living a totally gluten-free life? And I also agree with Deb that sometimes it is necessary to cut out a whole lot of foods initially to let the gut heal. One supplement that has really helped me is l-glutamine, which promotes intestinal healing.
Anyway, I’m glad you’ve found your way here. And there are some very caring folks that comment here and may have some additional insight for you. And I also want to say I’m so very sorry about your brother. I know that’s a hurt that doesn’t go away.
Thank you cindi for your reply.this morning is really bad today.my face is numb,my eyes are really out of focus and won’t track right.Its tiring living with this.my limbs feel like there 100 lbs a peice.i can’t remember what I’m writing about half the time.I just want to come home sort of speak.I have a ent appt again this afternoon,he will look in my ears and say “looks good”,and that will be the extent of it. I got new glasses last month and they don’t work well anymore.my vision and hearing are getting really really bad.my entire body hurts so darn bad I could puke.tthey want to send me back to the mayo clinic,for what I do not know they seem to scratch their heads pretty good the first time I don’t know what a second time is going to do probably the same as the first I would imagine.i’m really getting tired of seeing my wife and kids looking at me waiting for me to come home sort of speak. I am at the point where I do not know where to turn for help they ran every test known to man on me, and still no nothing more than the first day I walked in with this problem. This is where I think what is all this for why did that happen to me,I climbed one huge mountain in my life,why another.i try facetiming my brother and dad but they ignore the call.maybe I would to at this point cause I’m sure there at a loss.I often wonder if the Lord is realthen why doesn’t he intervene. Maybe that’s selfish on my part and probably is but if he is there and does see all and hear all that I wish she would hear my cry and help me get healthier so I can be with my family in the way that they need and I need also, just a bad day I guess….. Sorry to all.
Bubba
And thank you cindi for the regards to my brother.
No need to be sorry. It’s hard when a person feels so bad. I’ve been there. I’ve felt so desperate at times. But I just kept asking God to help me. And He has. But I must admit I still want Him to do more. It’s true we don’t understand all His ways and won’t on this earth.
Let me ask you though: Have they thoroughly checked you for thyroid and/or adrenal hypo function? I ask because first, those two things as SO associated with celiac and 2nd, the tests/criteria they use for testing are really bad.
As Deb pointed out, they need to do Free T4 and Free T3 tests (the actual thyroid hormones) as well as thyroid antibodies (which show if you have Hashimoto’s, thyroid autoimmune disease). Docs ordinarily just run the TSH lab test which is a AWFUL lab test for diagnosis. The range is much too broad. 90% of folks have a TSH of 1, and a person can be very sick at even a 2.5, and yet that is in range. Free T4 and Free T3 tell the story. As for checking adrenals, a morning AM blood cortisol test would be the first step to check. The value should be high in range.
One other thing that comes to mind is to ask you if you use aspartame (NutraSweet) in anything. It can affect vision horribly and cause facial numbness. Been there, did that one too. And had relief within 48 hours when I stopped using it.
Don’t give up…
I posted on this page and now there not coming up?!
No aspartame,about a month ago I had to get glasses with prizims(hope spelt right).there not helping,my left eye is blurry and my right eye won’t keep up with my head movements.seen ent again for the thousant time. He want to put tubes in my ears,I asked him if celiac could do this he said it effects the mucous membrane which your ears do have some of that in the inner ear.i have horrible tmj,he also said the tmj and my neck problems could do this.he thinks it’s pretty much all neurological but,he said he doesn’t think that celiac was causing this.I then asked him if a auto immune disease could do this he said yes………OK DOC! Why is celiac ruled out then.i didn’t even want to argue with him,been there done that.he said that it’s not a vestibularneuritis which they said it was cause vestibularneuritis does not cause hearing loss he said which I have.he looked at my throat and wondered why my tongue was lumpy and white,told him I don’t know but it’s always really tight feeling(my throat).my eyes and throat being so dry he didn’t have an answer for.so we’ll see what happens. Bubba
Sounds like your Sjogren’s is pretty bad. Do you have a Rheumatologist? That is who would treat many of your probable other autoimmune diseases besides Celiac. Sjogren’s is also autoimmune, and causes a lot of problems with mucose membranes.
Im losing this battle.
Can all the vitimans I take cause this with the dryness.
Bubba,
Do check to see if you’ve had thyroid function tests although if you did, they probably only ran the TSH lab. But find out what that was. I repeat this again because the symptoms you have mentioned – carpal tunnel, TMJ, mucin build up in the ear, vision problems, etc. – are all very common hypothyroid symptoms. It’s worth checking this out because of the strong association of Hasimoto’s (autoimmune thyroid disease) among celiacs.
Also, are you Strictly eating a gluten free diet?
I had a nerve conduction test a couple of months ago and they said that I have carple tunnel in my right hand. I told them that my whole body felt like my right hand and they said they could not explain it
Cindi
I wrote down those test for thyroid that I want done. I hope and pray to God this is it! Thank you for your concerns.
Bubba
I just wanted to say to deb and cindi thank you for your caring words and being Very honest and open.i hope we can still stay in touch on this page!
Your friend,
Bubba
Subscribe to the blog, Bubba, and you will meet lots of good people here. When you get those thyroid tests done, come on back and share the results. The actual results, not just what the doc says. Like Cindi said, glad we were here, and happy to have made your acquaintance, as well.
Glad we were here for you – and glad to have met you. Stay in touch…
Today is my birthday
Well HAPPY BIRTHDAY, Bubba! I hope you have some joyous celebration on your special day.
P.S. My birthday is Friday – yep, I’m a Halloween baby!
Have a good one, Bubba 🙂
Thank you very much!
My cousin came over for my birthday and he has thyroid disease,short of my ear issue we have the exact same issues,Im going to go see his doctor to get a referral! I go back to the ent this morning and he putting tubes into my eardrums.kinda nervous
well that’s interesting. you probably know there is a strong genetic component to autoimmune disease. autoimmune thyroid disease is rampant on my maternal side. keep us posted! and good luck at the ENT.
The ent visit was not good,he put tubes in both my ears and now my hearing is even worse.he said that I should be able to hear better immediately.it was not that way at all!! I was almost banking on a improvement but,it just didn’t happen that way.he said he thinks that it is neurological and there was nothing that could be done about it.oh well had to give it a shot.sometimes I still think back on how this all came about and it was just a stupid headache!
Hello?
You might also want to check your B12. There is a genetic mutation that can prevent you from converting cyanocobalamin (the most common b12 form because it’s cheap) into the form your body can actually use. You might want to look into methylcobalamin or hydroxycobalamin supplementation and check out MTHFR mutations. I know b12 deficiency can cause a ton of issues. Also, may be wrong but I think your b12 levels can look ok, but if you have the mutation you may still be deficient since your body can’t convert what it is storing.
Sure is worth looking into! Thank you.
Bubba
My son is in critical condition at kootenai medical center in coeur d Alene Idaho.he got into a terrible car wreck when he hit black ice.plus this shit they can’t come up with on my end.this crap is taking its toll on every aspect of my life. I can’t do this fucking shit much longer!!!gluten dude please reply with something please!!!!!
Bubba
Bubba,
I am so sorry to hear of your son’s car accident and pray that he will experience a good recovery. I also know that when we are ourselves dealing with illness, everything else is so much harder to cope with so I know this is very difficult for you.
I’m not sure Gluten Dude follows all of the old posts so he may not have even seen your comments here. Be sure to follow his blog for newer posts.
Thanks cindi
Sending every ounce of positive vibes your way Bubba. Hang tough.
Gluten dude I need to talk to you really bad,if you could talk to me by phone please I’m losing this battle faster than shit and I got a wife and five children.please for the love of God call me(208)651-4842
Anyone call me for that matter,please I don’t want to go through with what I’m thinking
I just has cyats removed from my right arm.they thought it might be lymphoma,but is was not thank god! I have neck surgery the 29th of this month.i can’t sit up anymore cause my right side goes numb instantly.im getting really scared.im trying to hold it together. I can’t remember much anymore.i don’t know what is mental or physical anymore. All I want to do is sleep. This isn’t any way to live. I’m detected from my wife and kids.i hope I’m not going mental.im holding on with all my might.pleAse reply cause I’m at a loss. I wish I had the will power of the gluten dude but it’s hardto hear and see well anymore so I am searching for a way to deal with this situation
Bubba,
I’m so sorry to read that you’re having such difficulty. It is very hard when we are in pain and having severe physical symptoms to deal with every day life. Did you get any thyroid testing done? I hope your physicians will be able to give you some answers about the numbness. I had several cysts develop when I was undiagnosed with thyroid disease. I truly hope that things turn around and head in a positive direction for you soon!
Cindi
Thanks Cindy me too
Had my neck surgery today. Hope it helps. Got to go in to my doc again! When they did pre-op test for my surgery they did standard test for MRSA, did a UA and a chest x-Ray. They found a spot on my left lower lung,now I’m getting tested for whatever the heck this new problem is. At any rate thought I would give update. Hope all is well with all of you!! Your friend,
Bubba
Hang tough Bubba.
How are you condition and deb? Haven’t heard from either of you for awhile,I hope all is well
Hi Cindi and deb,
Just wanted to say hi. Things are getting rough these days,don’t want to sound like a bummer all the time but it’s like I’m running out of time.i can’t get out of bed anymore. I hope you both are doing well. I found out that depression is a hell of a thing,along with this horrible disease. Hope all is well with you both,just wanted to say hi.
Bubba
Hi Bubba. So sorry to hear you are not doing better. Depression is very difficult to deal with. I have a lot of pain from the Celiac, physical pain, and used to have pretty bad depression. I hope you can hold to the thought that in a year from now, maybe less, maybe a lot less time, everything could change. Hang on to the thought that everything changes. Know that others have traveled your road and come out at the okay. Please take care, Bubba.
Hi Bubba,
I’m still here but have been having a rough recent two weeks – with back spasms. This is how it started for me with the no denying the celiac disease so I’ve been kind of frustrated – not to mention IN PAIN. Back muscles are interesting things – no sooner than one group of muscles calms down there goes another group of muscles. OUCH! I want to get into the shower and haven’t been able to – oh, vanity. But I just keep trying to wait it out. But it is frustrating – and yes, can be so depressing. But I got so much better before and I’m just holding on to hope that this too shall pass.
So that’s my tale of woe. 🙂 Riding out the pain and hoping that soon I can also put some more meat on my bones. Who would have ever thought a woman would be praying for FAT??? 🙂
Good to hear from you Bubba – hang in there…
Cindi
It is very nice to hear from both of you.i hope things start looking up for both of you. I’m pretty much completely bed ridden now.i can barley go to the bathroom.my wife and kids are supportive but it has really taken a toll on my marriage
It is very nice to hear from both of you.i hope things start looking up for both of you. I’m pretty much completely bed ridden now.i can barley go to the bathroom.my wife and kids are supportive but it has really taken a toll on my marriage
just saying hi to everyone. Bubba